Blog Katie Allen October 2023
Happy Fall and, from Canada, Happy Thanksgiving! One of our local farms does a pumpkin festival every autumn, as well as a tulip festival in the spring, it’s always fun to see how they repurpose their decorations between the events. The windmills are just as cute surrounded by pumpkins as in the tulips. These past […]
Blog Katie Allen September 2023
Rocking the new brace! A few months ago, I posted that I had been cleared to purchase a new stabilizing knee brace and that I had received funding to support this expensive venture. As of this month, I officially started to wear the new 3D-printed stabilizing brace. For some context, I had a fibreglass brace […]
Blog Katie Allen August 2023
One tense moment for anyone with multiple doctors and specialists is when they disagree or need different things. One moment I recently went through was a change in regulation regarding referrals, where my specialist was now required to get a referral more often than my family doctor thought necessary. It led to tense appointments with […]
Blog Katie Allen July 2023
This month’s blog is a bit more stream-of-consciousness than usual and I apologize, but it felt like something I needed to say and this was an appropriate place to work through some emotions. Likewise, this month’s picture is of a favourite walk of mine that I go to clear my head. I found out today […]
Blog Katie Allen June 2023
Summer fun on vacation is just one of those childhood memories that glows the brightest. However, when you have a rare disease, there are a few handy tips for making it all fun in the sun. The first lesson I learned was to have extra medications, whether it’s cancelled flights or wildfire season in Canada, […]
Blog Katie Allen May 2023
Spring has finally hit the west coast of Canada, though it’s probably more accurate to say we skipped spring entirely and went straight to summer. Our little town had its second annual tulip festival, and while it may be much smaller than the tulip fields of Amsterdam, it was still so pretty that you just […]
Blog Katie Allen Apr. 2023
I was 12 years old when I started receiving laser treatments (that’s me with the awful haircut about a month after the first one), 17 years later the marks look vastly different, though the asymmetry will always be there. Even with years of self-reflection and confidence gains, I still struggle to take a photo face-on, […]
Blog Katie Allen Mar. 2023
I had the wonderful opportunity to attend the Canadian Organisation for Rare Diseases (CORD) Rare Disease Day Conference on March 28th and 29th. I attended virtually here in British Columbia while the conference was held in Ottawa, allowing patients and patient advocates from across Canada to come together and sit down with Members of Parliament […]
Blog Katie Allen Feb. 2023
Happy Rare Disease Day! Like many patients with a rare disease, the reality is many of my doctors are not in my city. So I travel to larger centres for treatments or appointments with specialists. When I was little that meant flying from Saskatchewan to Vancouver for a meeting with the Vascular Anomalies Team at […]
Blog Katie Allen Jan. 2023
While I never felt like CMTC held me back from sports and other physical activities, there have been some challenges. With a 3cm leg length difference, I tend to trip and fall at the best of times, especially in activities I competed in as a teenager. Over the years, my balance has somewhat improved; but […]
